Author Topic: Coming up on four months...  (Read 3140 times)

Timothy

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Coming up on four months...
« on: October 13, 2008, 08:45:18 pm »
I can't believe I've only found this forum today, nearly four months after my surgery.  Here's my recap:

After the sudden onset of dizziness at the beginning of April, this spring/summer didn't go exactly as planned.  My primary care physician (bless him) ordered an MRI after just a couple of weeks of dizziness and found a small (5mm) AN on my right side. He sent me to a local ENT, who sent me to Yale, but also suggested I consider the House Clinic.  I initially disregarded the House Clinic recommendation, as the prospect of getting from Connecticut to LA for surgery, getting my children cared for, etc. just seemed to large to deal with.

I met with the doctor at Yale, who confirmed the diagnosis, but took the "wait and see" attitude.  A couple of days later I was browsing the web and looked up the House site. Then, noticing that they do phone consultations for out-of-town potential patients, I sent my MRI and records in and requested a call.  I was amazed when a couple days later Dr. Luxford from the House Clinic called and spent 45 minutes(!) on the phone with me explaining and answering questions.   Suddenly, the House Clinic seemed like a possibility.  Dr. Schwarz called me a couple days later and confirmed the feeling that the doctors at the House Clinic are the best in their field.  It seemed that a Middle Fossa was the best approach.

Twenty years ago, my wife had brain surgery at the Mayo Clinic to remove a malignant glioblastoma.  Her doctors in Seattle, when it was clear the mass on her MRI had changed, sent her to Minnesota for the surgery and she never regretted it (she's had a clean bill of health since then!).  It's not that her doctors were incompetent, it was that at the Mayo her case was routine; significant, but routine.  She had the same attitude about this surgery -- the doctors at Yale are fantastic, but this was not routine for them.  We talked with friends and parents, prayed A LOT, and decided to pursue the House Clinic.  By this time my balance had deteriorated and I was using a cane... but I never had any other symptoms.

Then we had to wait for the insurance company.  After several weeks and several delays, including several aborted trips to the airport, we finally got surgery approved with Dr. Luxford and Dr. Hitselberger, instead of Dr. Schwarz. (Ironically, while in LA I met a man whose insurance company objected to Hitselberger and approved Schwarz instead... go figure!)   Surgery was scheduled for June 17 and we rebooked tickets from JFK to LAX.  My kids (13 and 10) stayed with friends for the first few days until my parents could get to Connecticut from Seattle, my wife's mom flew down from Spokane to LA to be with Laine, and we flew out on to LA on June 15th and checked into the Seton Guest Center.

June 16 was full of tests, meeting Drs. Luxford, Hitselberger, and Stefan, and another unexpected MRI.  Interestingly enough my hearing was actually better in my right ear (the ear with the AN) than the left ear.  Due to the the lack of any symptoms other than balance and the small size of the AN they wanted to confirm the tumor before they opened up my head.  Everything confirmed, I headed into surgery on June 17th.

I remember being wheeled onto the sixth floor, getting my head shaved, having the anesthesiologist wrestle with my small veins... and then vomiting post-op in ICU some six hours later.  Funny what goes through one's head... first thing I did was wiggle my toes.  My wife always said that was the first thing she did when she woke up from her surgery --- she had a serious risk of being paralyzed; I didn't -- but that's what stuck in my head.  My head was wrapped in gauze, but in my haze I was pretty sure I could hear out of my right ear.   I'm a musician and God was gracious enough to let me keep my full hearing through this.

After a day in ICU, I got moved to a regular room where I could actually get some rest.  Three days later I was discharged to stay a couple more weeks at Seton Guest Center on the hospital campus.  Lots of sleep, lots of audiobooks and music.  Things were progressing well and I got to go home on July 1st, a couple days earlier than planned! 

By the end of July the pain was pretty much gone. My balance was slowly getting better, and I felt good enough to drive by mid-August.  I was out from work through the end of the summer, and went back the week before Labor Day.  Mid-September the cane was retired to the coat closet.   Finally, beginning of October I felt good enough to try to start exercising again.

Now, a week after getting back to the gym, I seem to be backsliding and my dizziness has gotten much worse.  I feel like I've slipped back a month. Really frustrating.  So perhaps I wasn't ready.  The way I'm feeling today I may need to pull the cane back out, just for that extra point of stability.   

And then I ran across this site.  What an encouragement!

Blessings,
Timothy

Right middle fossa on June 17 2008 -- just 5mm.  Dr. Luxford and Dr. Hitselberger at the House Ear Clinic in L.A.
Crazy dizzy but no hearing loss or facial nerve issues.

MAlegant

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Re: Coming up on four months...
« Reply #1 on: October 13, 2008, 08:52:13 pm »
Hi there,
I'm not too far behind you (3 months) and for different reasons feel at times like I'm making no progress.  And it is frustrating.  I'm glad you found us however, and you will notice that there are a lot of "House" fans on this site.
Best,
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: Coming up on four months...
« Reply #2 on: October 13, 2008, 10:03:25 pm »
Hi, Timothy and welcome.  I found this forum post op also - about 10 days in my case - and I'm extremely glad I did.

You are fortunate that your primary care physician thought to send you for an MRI right away; many AN patients are misdiagnosed for years because their doc doesn't order one.

Due to the size of your AN (small) did anyone tell you that radiation was an option?  I see you mention watch & wait being suggested, but I'm kind of surprised that no one recommended radiation. 

Obviously water under the bridge at this point, but I'm just curious.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: Coming up on four months...
« Reply #3 on: October 13, 2008, 10:58:34 pm »
Hi Timothy,

Welcome to the forum.

It doesn't surprise me to hear that your balance didn't get back to perfect in just 4 months. Based on accounts I have heard, it can take most of a year or more to really feel stabilized again. Although it seems like a setback, I wouldn't let it bother you too much yet. If it continues to get worse, you may have to seek help with it, but you may find that you get better and better as the months go by. Just take it a little slower.

It is great to hear that you had no other issues, and overall it sounds like a good outcome to me.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Omaschwannoma

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Re: Coming up on four months...
« Reply #4 on: October 14, 2008, 07:20:22 am »
Hi Tim and welcome! 

You did not mention vestibular re-training therapy as part of your recovery plan.  I had 6 weeks of specialized training to re-gain my balance perhaps you can look into this near your home, make sure they know about vestibular training. 

The other thing I want to mention about balance and our brain re-learning is the "large curve" involved.  The more we do by putting ourselves back into the life we once led the more our brain/balance is challenged and the more we find we are "back sliding".  You are not backsliding but challenging your balance/brain to relearn and compensate.  If you feel balanced in your house, but not outside it's because your field of vision is larger, more for your eyes, brain and balance to deal with.  In time this will become better, same with the gym, there's noise, lots for the eyes to see and lots for the brain to assimilate.  The more you continue this activity the better your brain will compensate.  Yes, it's difficult in the beginning but with time it gets better.  Try mall walking on the weekend for instance.  Lots going on here, people moving about quickly, bright lights, large visual field, shiny floors and noise.  Exhausting in the beginning but really worth the effort.

Hope this helps.
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Timothy

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Re: Coming up on four months...
« Reply #5 on: October 14, 2008, 07:30:27 am »
Hi, Timothy and welcome.  I found this forum post op also - about 10 days in my case - and I'm extremely glad I did.

You are fortunate that your primary care physician thought to send you for an MRI right away; many AN patients are misdiagnosed for years because their doc doesn't order one.

Due to the size of your AN (small) did anyone tell you that radiation was an option?  I see you mention watch & wait being suggested, but I'm kind of surprised that no one recommended radiation. 

Obviously water under the bridge at this point, but I'm just curious.

Jan


I am fortunate my primary care physician requested the MRI!  I heard this repeatedly from my ENT as well as the House doctors.  If anyone needs a primary care physician in the Ridgefield CT area I strongly recommend Dr. L. Leibowitz at Rigdefield Primary Care,

I did discuss radiation with Dr. Kveton at Yale and Dr. Luxford at House.  The consensus was that radiation wasn't really consideration because of my age and the fact that I have had no hearing loss.

Tim
Right middle fossa on June 17 2008 -- just 5mm.  Dr. Luxford and Dr. Hitselberger at the House Ear Clinic in L.A.
Crazy dizzy but no hearing loss or facial nerve issues.

Timothy

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Re: Coming up on four months...
« Reply #6 on: October 14, 2008, 07:32:39 am »
Thanks for the welcome!  I know that overall I'm doing really well, and have had very few side effects.  Just gets a little frustrating sometimes.

Tim
Right middle fossa on June 17 2008 -- just 5mm.  Dr. Luxford and Dr. Hitselberger at the House Ear Clinic in L.A.
Crazy dizzy but no hearing loss or facial nerve issues.

cin605

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Re: Coming up on four months...
« Reply #7 on: October 14, 2008, 11:06:15 am »
Welcome!It takes time....
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

mimoore

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Re: Coming up on four months...
« Reply #8 on: October 14, 2008, 11:09:12 am »
Welcome Tim,
I too found this site after my surgery - I was slightly bummed because the surgeon was not sure if I had a meningoma or an acoustic neuroma. It turned out to be an AN and I certainly could have used the advice and support prior to surgery. I researched things like crazy and felt preparedd but there is a lot to be said for first hand experience.
I had my surgery June 4th and I know all about moving two step forward and one step back. I think it must be part of the healing process or our bodies way of reminding us that we just had 'brain surgery'.
I am so glad you did not loose your hearing (I did and have facial paralysis). Life is good we are alive and the greater universe is taking care of us all.
You will find great support and wonderful friends.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

wendysig

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Re: Coming up on four months...
« Reply #9 on: October 15, 2008, 08:39:37 am »
Timothy,
Welcome to this forum!  You will find it a wonderful source of support and information.  I was fortunate enough to find this forum almost immediately after my diagnosis and the wonderfuly people here have been a tremendous help with information and emotional support.  I too have had a wonderful outcome.  My only post-op problems are being SSD and  balance problems -- but the balance is improving.  I went for vestibular rehab which was a big help and continue to do exercises on my own now that my insurance benefits for rehab have ended.  Most days I feel lke I am making progress although some days feel like a step back.  This is normal from what I've heard,  unless you really regress, in which case you should speak to your doc.  My surgeon told me to be paient with regard to balance.  According to him you regain 90% of your balance during the first month or two -- it takes 6 months to a year to regain the other 10% and that may be why you're feeling frustrated.  It is hard to be paiient, but the AN experience is a lesson in patience to be sure.

Best wsishes,

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!